In hopes of understanding the Support Intensity Scales Assessment

This posting is very complicated.  I’m trying to make the Support Intensity Scales (SIS), which are used to assess our folks with ID, understandable to those who are reading reports.  These scores are used and have been reported in “research” by DDD but unfortunately, the author does not report the significance of the scores nor use as they are intended by the developers of the SIS.  My hope is to clarify the issues and to show what these scores really do represent by the assessments that were completed in Washington State.

Information regarding the Supports Intensity Scales (SIS) – used in Washington State to assess the support needs of individuals with Intellectual Disabilities.

The purpose of the SIS has 3 sections:

Section 1:  Support Needs Scale – 6 Life Activity Areas

  1. Home Living Activities
  2. Community Living Activities
  3. Lifelong Learning Activities
  4. Employment Activities
  5. Health and Safety Activities
  6. Social Activities

Section 2:  Supplemental Protection and Advocacy Scale (WA does not use this portion in the DDD assessments)

Section 3:  Exceptional Medical and Behavioral Support Needs – to be seen as significant, the score on this section must be greater than 5 (range 0-32 Medical, range 0-26 Behavioral) or have at least one area score a 2 (range 0-2).  If the answer is yes to any of these questions, it is highly likely that the individual has a greater support need than others with a similar SIS Support Needs Index.

The presence of exceptional medical and behavior support needs is higher in the RHC populations than the other two populations.   Those who score in “exceptional need” will have higher support needs than other clients who may have the same Support Needs Index Score.

This graph indicates the frequency distribution of the Support Needs Index – you can see it follow the typical bell curve.  The cost of care increases as the SIS increases.  For those with significant exceptional needs, their cost of care will be more than someone else with the same SIS Support Needs Index Score.

It is clear from the data presented that those in the RHC have significantly higher support needs and exceptional medical and behavior needs than the residents in the Community Residential and Other Community Residential.  I have written to Barbara Lucenko and Lijian He, authors of the DDD Report several times to have them clarify and correct their information or to at least explain thier conclusions but they have not responded.  I hope that other research which is done in our state is more reliable than some of these reports published by DSHS.

What is an Intellectual Disability (ID)

This is a short video put out by The American Association for Intellectual and Developmental Disabilities.  It helps to clarify what these terms mean.   I have tried to communicate for years – IQ cannot be the only determining factor in seeing how a person is able to function.  This multidimensional definition is much more in tune with reality.

The highlights of the information are:

There can be HUGE differences between someone with a developmental disability and one with an intellectual disability – a person with a DD does not necessarily have an ID. I would venture to say that every person who lives in the  Residential Habilitation Center (RHC)  has an ID of significant support needs.

Also with these new definitions they are looking more holistically and in a multidimensional view of human function.

These are:

1. Intellectual

2. Adaptive behavior

3. Health

4. Participation

5. Context (cultural aspect)

The definition of ID must include the individual’s assessed supports needs. The person’s level of function is directly related to the supports they receive. When you look at the potential with appropriate supports then you have a complete system.

The supports must be sustainable in order to maintain functioning of the system.

We have the appropriate support systems in place for our residents who live in the RHC – and it has taken a lot of work to get to this point, we have oversight, we have trained staff, we have community, we have health care – we want others to have these same critical supports and this is why we advocate so strongly for a continuum of care.

Removing these supports from those who need them to function is not in the best interest of ANYONE.

Interesting Comments From The Arc of Snohomish County

This goes back to my own (non-scientific but easy and useful) assessment of function and needed supports for RHC communities:

1.  Can the person independently cross the street

2.  Can the person independently go to a familiar grocery store, pick out one familiar item, stand in line and pay for the item?

3.  Can the person independently and appropriately manage their own personal care needs?

My guess would be that for people who need supports to do all 3 of the above tasks, their support needs are quite high.  It would be extremely difficult and expensive to safely care for this person in an independent living home.  For people who have this high of support needs and for those who choose to live in an RHC community, the RHC community is the safest, least restrictive  and most cost effective environment for them.  This is where they will consistently receive the needed supports from trained and knowledgable staff in order to function at their optimal level.

This is not everyone’s choice but for those who do choose this environment,

why are they being denied that human and civil right?